MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Expand/ Collapse Topic
 
Replies By
View Topic
sheri47's picture
Replies 5
Last reply 1/29/2013 - 12:31am
Replies by: meeshka6059, Anonymous, CateB, POW, vicuk

Hospice said 2 weeks tops left for my mom at this point praying for a peaceful passing , damn mm

Login or register to post replies.

TAC's picture
Replies 2
Last reply 5/18/2013 - 8:44pm
Replies by: kylez

Haven't been here in quite a while. Am Stage IIIb and have been for almost 12 years in spite of 6 recurrences..all surgically removed..all on the skin or just underneath. Have had 8 surgeries, 4 skin grafts, 2 sentinel node biopsies, chemo (interferon), radiation, a vaccine and then Leukine for 8 years. Fortunately none of the recurrences were in organs. I did have renal cell carcinoma (kidney removed) and in 2008 had adenocarcinoma (lung cancer and upper left lobe removed....I don't smoke). Been quite a journey in the cancer world but so far so good.

Chicken Soup for the Soul was soliciting stories for their Cancer Book. So I submitted a story called The Room of Hope, my story in the chemo room. It was included in the book. My view of the chemo room was and is that it is a place where Hope lives so I wrote it from that perspective. If you are interested in reading many good, hopeful and yes, sad stories, get the Chciken Soup for the Soul - The Cancer Book. My story is one of them.

Login or register to post replies.

karebear1905's picture
Replies 4
Last reply 1/25/2013 - 9:38pm

I just finished an ippi treatment for a clinically trial I am on. With stage 3, I am always worried about results. I had my CAT scan done also. The scans went smoothly but a doc who read the scan indicated I had a 4cm growth in my right abdominal. But my onc said he did not see anything in the scan and not to be worried. Should I be worried?

Login or register to post replies.

Amanda's picture
Replies 3
Last reply 1/25/2013 - 2:28pm
Replies by: Owl, Amanda

So, my boyfriend has been trying to get into the Merk Pd-1 trial at UCLA , and were told once his scans were done, that the radiologist found something in the brain,and it needed to be compared to his previous mri's to make sure it wasn't something new.  It took two weeks to get them the disk and for them to compare.  

The doctor sent back an email saying the scans were compared and that if we could meet with him because ''We need to discuss the results and decide how to proceed.''

I'm very upset, since i was hoping for an all clear to start the drug...now it sounds like (to me) that it's not going to happen based on new brain lesions.  any opinions on the wording of his email?  Or are we probably disqualified?

I replied to the email asking straight out if we were disqualified, and i'm waiting on a response...

thanks- Amanda

"Give thanks in all circumstances"

Login or register to post replies.

sjl's picture
Replies 6
Last reply 1/26/2013 - 10:38am
Replies by: Jim M., lou2, NYKaren, Tina D, jcmp

I've posted on here a number of times about my husband's fantastic response to carbo/taxol but it has quit working.  He's developed a new tumor on his neck and one other that had been shrinking is growing again.  He was given chemo in the beginning instead of Yervoy because his tumors were so agressive that there wasn't enough time to try anything else.  He needed a quick response and he got it and continued to respond extremely well until a few days ago when I noticed the new growth.  The chemo began in August.  He's not eligible for a clinical trial because of a second primary lung cancer.  So, for those of you who have been or are on Yervoy, what can he expect?  From what I can gather, it may take awhile for us to see results and I've read about the possible side effects.  First, we have to get it approved by our insurance company.  We have Highmark Blue Cross Blue Shield PPO.  Anyone know if they cover it or not?  We were told that he could continue to work and so on as usual.  Do most of you find that to be generally true?  And do you get good results with it?  There just don't seem to be a lot of options for him.  If this fails they said possibly more surgery or radiation.

Login or register to post replies.

POW's picture
Replies 3
Last reply 1/25/2013 - 5:15am
Replies by: Owl, aldakota22, Linny

My, oh, my! What a wild ride this melanoma is!

After being admitted to hospice in-patient last week, my brother's condition has improved markedly due to dexamethazone treatment. Now he is too healthy for hospice and we are trying to find him a nursing home placement. Dexamethazone is not a cancer cure, of course, so this reprieve is temporary. But as Mark Twain said, reports of his death are greatly exaggerated at this time. The family is delighted with his improvement, but dreading the next set-back. My brother, on the other hand, is stil convinced that he can "beat the beast". What a crazy disease this is! 

If anyone is interested in this cargiver's feelings about this emotional rollercoaster, I did post about it on the Off-Topic forum. And so we continue the journey. I'll keep you posted about developments.

Login or register to post replies.

dflohr's picture
Replies 6
Last reply 1/25/2013 - 11:38am
Replies by: Ali, NancyGM, Marcia1, Anonymous, POW

Does anyone have any experience with this drug? Has it worked for you and did you have any side effects? My husband had Stevens Johnson from Zelboraf so cannot go back on that or Ippi. Are getting a second opinion today but doing research on my own there is not a lot available until debrafenib and trametinib are approved. Thanks for any help  you can give me.

Login or register to post replies.

dflohr's picture
Replies 0

Does anyone have any experience with this drug? Has it worked for you and did you have any side effects? My husband had Stevens Johnson from Zelboraf so cannot go back on that or Ippi. Are getting a second opinion today but doing research on my own there is not a lot available until debrafenib and trametinib are approved. Thanks for any help  you can give me.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 10
Last reply 2/26/2013 - 10:40pm

 

 

LISA LYNN SCHMIDT (nee BLACK) With great sadness we announce the passing of Lisa, who courageously battled with Melanoma for the past 2 years. Lisa passed away peacefully at home, with her family around her on Sunday, January 13, 2013. She is survived by her loving and devoted husband, Richard and her beautiful little daughter Isabella, just 3 years old. Lisa's loss will be deeply felt by her mother Linda Smeaton, her father Welsey Black and her brother Jared Black. She will be sadly missed by her in-laws, Margaret and Robert Schmidt, Rob and Sarah Schmidt and their sons Tyler and Cameron. Lisa will be fondly remembered and sadly missed by her aunts, uncles, cousins and the many friends who supported her throughout her illness. The family is so thankful for your friendship and love during this difficult time. Visitation will be held at the Visitation Centre in Mount Pleasant Cemetery 375 Mount Pleasant Road (east gate entrance) on Saturday, January 19th from 10:30 a.m. - 12 noon followed by a celebration of her life in the chapel at 12 noon. In lieu of flowers, donations in Lisa's memory to the Princess Margaret Hospital Foundation for Cancer Research or the Temmy Latner Centre for Palliative Care would be appreciated

Login or register to post replies.

Tritzy's picture
Replies 13
Last reply 1/25/2013 - 10:19pm
Replies by: Redhorse, audgator, Anonymous, Tritzy, Charlie S, POW

My boyfriend has just recently been diagnosed with melanoma. He hasn't actually been staged because we haven;t gotten the PET scan to see if it has spread but by the depth of the tumor from biposy the pathologist was fairly certian. From what they took it was 3mm deep but the tumor went deeper. This is scary. I have read alot and know how bad it might be. I was trying to keep this from him. He is sort of a hot head and I didn't want him to freak out and do drugs and drink like crazy. He is an ex-addict and an alcholic. Well lately he has been growing more and more impatiant. We haven;t gotten anymore treatment other than a biopsy because he has no insurance we have applied for PCIP and gotten approved but coverage doesn't start till febuary 1st. So he got an appointment with the county hospital through American Cancer Sociery. He thought he would get more answers but that isn't what happened. They told him what he already knew. This angered him which he has already been getting angrier and angerier. Then the other night awoke with terrible night sweats. This freaked him out so of course naturally he googled it. This told him how bad it probably is. The thing I have been holding from him in hopes that I can keep him happy for that much longer. He became very very angry, He says hurtful things to me and starts fights with others. I just don't know what to do. I feel so alone. I want to be there for him. I love him more than I ever thought I could love someone but being with someone that seemingly hates you and everything you do is really hard. I can't talk to my friends because our relationship hasn't been perfect and they just don't understand. They either say that its because of all the other things he does or that what we have just isn't love, people don't treat people they love that way. I just wanna yell at them. HE IS ANGRY BECAUSE HE IS PROBABLY DYING!!!!! HE TAKES IT OUT ON ME BECAUSE HE IS CLOSEST TO ME!!!! This is something I understand. I just don't know how to not involve my own emotions, To not get upset when he is angry at me. I just need someone impartial to talk to. Or advice.

Login or register to post replies.

My boyfriend has just recently been diagnosed with melanoma. He hasn't actually been staged because we haven;t gotten the PET scan to see if it has spread but by the depth of the tumor from biposy the pathologist was fairly certian. From what they took it was 3mm deep but the tumor went deeper. This is scary. I have read alot and know how bad it might be. I was trying to keep this from him. He is sort of a hot head and I didn't want him to freak out and do drugs and drink like crazy. He is an ex-addict and an alcholic. Well lately he has been growing more and more impatiant. We haven;t gotten anymore treatment other than a biopsy because he has no insurance we have applied for PCIP and gotten approved but coverage doesn't start till febuary 1st. So he got an appointment with the county hospital through American Cancer Sociery. He thought he would get more answers but that isn't what happened. They told him what he already knew. This angered him which he has already been getting angrier and angerier. Then the other night awoke with terrible night sweats. This freaked him out so of course naturally he googled it. This told him how bad it probably is. The thing I have been holding from him in hopes that I can keep him happy for that much longer. He became very very angry, He says hurtful things to me and starts fights with others. I just don't know what to do. I feel so alone. I want to be there for him. I love him more than I ever thought I could love someone but being with someone that seemingly hates you and everything you do is really hard. I can't talk to my friends because our relationship hasn't been perfect and they just don't understand. They either say that its because of all the other things he does or that what we have just isn't love, people don't treat people they love that way. I just wanna yell at them. HE IS ANGRY BECAUSE HE IS PROBABLY DYING!!!!! HE TAKES IT OUT ON ME BECAUSE HE IS CLOSEST TO ME!!!! This is something I understand. I just don't know how to not involve my own emotions, To not get upset when he is angry at me. I just need someone impartial to talk to. Or advice.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 1/23/2013 - 8:33pm
Replies by: Thandster, lou2

Just diagnosed as shown above with a mitotic rate of 10 per sq ml.  Since I have no idea what this means I am very concerned.  Can anyone help with this?

Thanks

Login or register to post replies.

Just diagnosed as shown above with a mitotic rate of 10 per sq ml.  Since I have no idea what this means I am very concerned.  Can anyone help with this?

Thanks

Login or register to post replies.

94z28joe's picture
Replies 7
Last reply 1/30/2013 - 8:48pm
Replies by: NYKaren, sgrain, 94z28joe, Ali, POW

So its been alittle over a week since my first infusion of ippi and it seems like I am already having side effects. Started last week with my abdomin area felt like I ate something really spicy(which I didn't). Then on Monday had some stomach issue and diearria took some imoduim and went to see the on call doc he said didnt think it was ippi related. Yesterday I started feeling really fatigued I went to sleep as soon as I got home from work only to wake up at 10 with stomach issues agian took some more imodium so far so good agian contacted the doctors office and they said just keep using imodium. I didnt expect to have the stomach issues and fatigue a week after the first does. Hopefully i gets better and not worse with the other does...yeah right I dont see that happening.

Login or register to post replies.

Pages